How to Discuss and Document Your Health Care Wishes Now Before a Medical Crisis Hits
By Lynn Durmala, APN-C, ACHPN, Virtua Nurse Practitioner—Palliative Care
COVID-19 hit the U.S. in March 2020, and showed us all how quickly life can change, seemingly, in an instant. We celebrated with hope and determination as some patients recovered from serious illness and were discharged from the hospital. Others, however, were forced to make harrowing decisions about their loved ones’ medical care when COVID-19 suddenly left so many too sick to speak for themselves.
The virus hit so hard and unexpectedly that many people were unprepared to make life-or-death decisions without the benefit of input from their loved ones.
Young or old, we all face uncertainty with the pandemic and how it can affect our health in the months ahead. In these challenging times, it’s important to consider advance care planning.
What is advance care planning?
Advance care planning is appropriate for all adults. It’s a way to discuss and document your preferences for the kind of care and treatment you would, or wouldn’t, want. And, you can do it before a health care crisis suddenly eliminates your ability to communicate those choices. It’s a way to make sure those who will be involved in your care understand your wishes.
How to discuss and document your health care wishes
There are several ways to start the process. In the event you’re unable to participate in treatment decisions, the most important thing you can do is name a surrogate decision maker. You should choose someone who will listen, hear, and talk openly about these issues with you. It should be someone you trust to honor your wishes.
It’s important to have conversations about what you value most in life, what circumstances would be acceptable to you, and how you would want to be treated in specific medical situations. Consider and discuss how you would feel if you were in the following scenarios:
- Unable to ever leave home
- In pain most of the time
- Required to have someone manage all your personal needs (feeding, bathing, dressing) 24 hours a day
- Required to live in a nursing home
- Unable to recognize family or friends
It’s also important to document your preferences. Putting your plan in writing helps those caring for you know your wishes so you get the care that you want.
The Conversation Project is a public service initiative with a goal of having every person's wishes for medical care expressed and respected. The website offers links to useful starter kits, available in several languages, which take you through the process of choosing your surrogate, identifying what’s most important to you, and empowering you to open the dialogue with your loved ones.
Five Wishes is another online resource that can help frame your discussions. It encourages you to consider five questions and discuss them openly with your loved ones. You may not have answers to all of the questions, and you may not feel all of the questions apply to you. However, they give you the opportunity to think about your values and goals, so you can share them with those closest to you.
Five Wishes encourages you to think about and discuss these issues:
- Whom do you trust to make medical decisions for you?
- What types of medical treatment you would want—or not want?
- What’s most important for your comfort and dignity?
- What important spiritual, cultural or faith traditions should be remembered?
- What do you want your loved ones and health care providers to know about you?
For a small fee ($5), Five Wishes allows you to document your choices in a paper or digital format. After you complete the document, you can share copies with your loved ones, save a copy or picture of it on your phone, and/or upload it to this national repository and share links to it with your family or friends.
Talking about it with your doctor
Your primary care provider (doctor, advance practice nurse, or physician assistant) is a trusted partner and resource for discussing your preferences and goals of care BEFORE you become critically ill.
After discussing the options and deciding on your choices, your provider can complete and keep on file the Practitioner Orders for Life-Sustaining Treatment (POLST) form. In New Jersey, the POLST form is an official medical order that would be followed in the event that you became too sick to speak for yourself.
The POLST form allows you to name a surrogate who can make decisions for you if you aren’t medically able to make them for yourself, identify your goals of care, and identify what medical interventions would be acceptable to you. The POLST form also provides specific medical direction to health care professionals who may be caring for you.
To be valid, a doctor, advance practice nurse, or physician assistant must complete and sign the POLST form. It’s advised that you review and update your POLST form periodically or as your medical status changes. You can modify or void the form with your doctor at any time.
None of us can predict how COVID-19 might affect our health in the coming months, but the threat is real. Talking about serious illness or end-of-life care with your family and friends is difficult. However, advance care planning helps you maintain control should you ever face a medical crisis that leaves you unable to speak for yourself. It’s also one of the kindest things you can do for your family and friends. It relieves them of the stress of making difficult decisions and gives them peace of mind knowing that they’re honoring your wishes.
Updated October 5, 2020